Saturday, August 8, 2015

A very good place to start

For our friends in blogland/Facebook who haven't heard, last Tuesday (July 28), Dan was diagnosed with EBV-related T-cell lymphoma. Last Tuesday was also the day that our house was loaded up and shipped to Michigan. Last Tuesday was also the day that we were to get started on our northeastern journey.

Since the diagnosis, I have meant to start writing about my thoughts, prayers, feelings, etc. Many of you have asked that we keep you informed, and I intend to do so.

The thing is, I don't know where to start. I feel like July 28 was eons ago...and, was just eleven days.

So, I guess, let's get you caught up on our lives. The last thing I wrote about was Dan's hospitalization in Houston in mid-March.

At the beginning of the week, I was so confident that we were going to leave Houston with answers. Instead, we just left with more questions. A list of doctors to follow up with in Tucson... ...and in Tucson, Dan had appointment after appointment after appointment. None came up with answers - none even seemed interested in finding answers - just "come back in 6 months." By then, I was fed up with that answer.

Dan mentioned to our primary care doc about going to Mayo after being diagnosed with an ear infection toward the beginning of May. He told us we could certainly go, but didn't seemed convinced that we really needed to.

So, in mid-May, I filled out the online form for Mayo's self-referral. Dan was scheduled for an appointment on June 17. (a month later)

Toward the beginning of May, Dan was invited to apply for the Academic Coordinator position with the Institute of Agricultural Technology/Animal Science at Michigan State University. Part of his duties would include coaching the livestock judging team, teaching, and advising the ag tech students in livestock management. While Dan has many dreams, being able to be part of the team at MSU would definitely fit into one. For us, it would allow us to be close to family - to become part of their lives, to watch our niece and nephews grow. The one thing that Tucson just really didn't provide for us.

Dan interviewed for the MSU job on June 12. He was offered the job on the 19th. He accepted by the 22nd. Our plans for a move just 5 weeks later started in earnest.

Dan's first appointment at Mayo was with an ENT specialist due to all the sinus infections he'd been having. During that visit what she noted (that I remember) was that she didn't think Dan was having sinus infections and 2) that Dan's case was definitely a complex one - and we should have had a longer appointment. She wanted us to see an immunologist and didn't think a visit to a hematologist was necessary.

The next week, I think he had 1 or 2 appointments at May for different tests - blood work, biopsies, CT scans. (honestly, the weeks have blurred together for me) During the first week of July, he went up to Mayo 3 times. On July 11, we met with an immunologist who said that we didn't need to see him, we needed a hematologist. But, we couldn't get one until, that obviously wasn't going to work. He also lectured Dan on the importance of not going to Michigan, and instead staying to focus on his health. Also, this doctor gave Dan a pneumonia vaccine...and he proceeded to have a weekend of fevers [because he doesn't have an immune system that can support this type of 'assault' - although the doctors didn't know that at this time]

On July 14, we met with an ENT surgeon who was going to remove a lymph node and a mass behind the lymph node. At that time, we were feeling super frustrated with Mayo because we felt like we were getting the run around. NOW, (hindsight being 20/20 and all) we see that they were running a hell of a lot of tests in a hell of a short period of time. At that time, the ENT team on Dan's case thought that perhaps Dan has an immunological disorder and this biopsy would help reveal that.

On July 14, we left Arizona for 6 days in Iowa where Dan was judging my county fair. While there, Dan met with my parents' chiropractor. Besides being a chiropractor, I think the best way to describe her is a 'healer.' Her assessment of Dan's health was right on with what his doctors' had been finding. Later that week, I met with her - and I daresay that her work on my emotional state has been one of the things that has allowed me to get through the last 11 days. In my meeting with her, she told me that Dan's systems are essentially "maxed out."

Dan's surgery was July 21. We ended up missing our flight out of Omaha on July 20...which caused a series of events that ended up with us spending the night in Dallas. While at the hotel in Dallas, I couldn't sleep...I was so nervous about the state of Dan's health, and honestly, afraid.

Now, for me, up until this point...I was just so angry. And, to be honest, this anger kept me from God. I just didn't feel like he cared. I felt abandoned. I felt like I was the only one who saw, who heard, who cared.

And that night, I couldn't sleep. I was wracked with anxiety. I got up to read - and I knew that instead I needed to pray. But, I felt like I was so far from God - and that He just simply couldn't understand the agony of knowing something is wrong with a beloved one. So, knowing I needed to obey this urge to pray, I started praying the rosary. It was Tuesday - the day of Sorrowful mysteries (for the non-Catholics, that's the passion of Jesus)...and immediately, I was in tears knowing she could identify with my fears. ...and, I slept.

That morning while flying first class to Phoenix, God revealed to me the role that I had in Dan's healing. For the first time in months, I believed that God was going to work about healing in Dan's life - a revitalization that we haven't yet witnessed. A fried of mine had been telling me that she saw Dan whole and healthy in Michigan - and, honestly, I couldn't share her hope at the time. I wanted it to be true, but was so skeptical that it could be. On that plane, I believed it could be possible.

The tumor that they removed from Dan's throat was about a square inch and was residing on the nerve in Dan's neck. Because of its placement, the surgery took twice as long - but the surgeon removed it masterfully.

That following Monday when we met with the surgeon (that, by the way, was the day that our entire house was packed up), it was apparent that she was very concerned. I am so thankful to God for her concern because she was able to get an appointment THE NEXT DAY with a hematologist. (which seems unheard of with Mayo) She didn't really fully grasp the report, but impressed upon us the importance of being seen by a hematologist at the University of Michigan (a research hospital) and not at a local hospital. We left her office thinking that Dan had either a blood disorder or lymphoma.

The next day, all our stuff was to be loaded into a semi; into our car and pick-up, and we'd give the ol' "Sayonara!" to Tucson. It was hot. We had a bunch of crap still not done from our need to leave the house Monday to get to the surgeon appointment. The movers packed up things they shouldn't have (and not what what they should have, we found out later)...and I was an emotional mess. We got everything packed up due to my sacrificial in-laws who ventured to Tucson on Monday in order to help us drive Dan's truck to Michigan, and my awesome best-friend, Anne Marie.

However, we got on the road to the hematologist late (and this time it wasn't my fault). So, I suggested we call Mayo to let them know. So, Dan does...and the receptionist says they cancel all appointments that are 10 minutes late. We will be at least 15 - maybe 20 minutes late. Dan tells her this is his only chance and he MUST meet with the doctor that day because he is leaving town. She said she'd call him back after talking to some people.

At this point, I have my "last" pissed off breakdown. I yelled at the injustice of it all; I hit my almost-empty water bottle against the steering wheel...and then, I did something that I hadn't done much of, lately, I asked God to get us in, to let us see that doctor.

...and Dan called again. ...and the receptionist said that whenever we would get there, the doctor would see us.

Thank you, Jesus.

...and the turning point begins here.


3 comments: said...

Wow - what a whirlwind set of circumstances, with pressures hammering within and without and no time to process the feelings within the tornado. So glad there is writing to help.

So glad there is God.

Amy Kies Bautista said...

Praying for you and Dan. I'm just a phone call away.

Amy Kies Bautista said...

Praying for you and Dan. I'm just a phone call away.